Raising early intervention and autism awareness through our amazing journey

Archive for February, 2014

In my daughters words

So I have talked about my son who has autism, but I haven’t really included my other two Nero-typical children.  My son has two older sisters, ages 11 and 8.  They have been reading the blog and thought it would be important to post how they feel, in their own words.  I think they did a wonderful job expressing how they feel.  So here you go!  🙂
 
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Rosslyn (age 11) –
 
“It was hard after I heard that my baby brother had autism.  I really thought that my mom was kidding and I started laughing!  But when my mom showed me the papers that the doctor had given her, I was heart broken.  After I knew about autism, I could totally tell!  He would scream and kick, and if we went to a store or something like that, I would see kids his age laughing and talking.  That’s what really pushed it.  I guess you could say I was a little jealous.  Jealous that other people could actually have a full conversation to their child, and we couldn’t even say “Milo!” to get his attention.  I remember when my grandparents came over after we found out, my mom started crying.  It was really sad. 

Over 2 months, my mom has been working with him non-stop.  He is doing so much better!  I’m so proud of him!  Every day he gets better and better!  I love him so much!  I even taught him how to snap! “
 
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 Lillian (age 8) – 

“When my mom first told me that my little brother had autism I was a little sad and embarrassed because when we went out to dinner he would scream.   It’s kind of sad to have your little brother have autism.  Most people feel bad for the person who has autism because they probably have a lot of frustration.   Its kinda hard to deal with autism because he doesn’t know how to talk and let out his feelings yet.  

The way that me and little brother communicate is that I say the word slowly and he understands it sometimes.  I can make him laugh by saying “hi!  Peek a boo”.  And sometimes I jump out at him and chase him but I don’t go full speed at him because I know he’s little.  I like to go outside with him.  I like to run around a tree and fall down on purpose and he starts laughing.   I want him to talk soon so I don’t have say the words slow, because I run out of breath when I do.  I love my little brother even though he has autism because to me it doesn’t matter.  He’s still the same as all of us.”
 
These girls are amazing with our little guy.  I am so proud of them!
 

helpful resources

Here are some great resources that our son’s case worker provided today. If you have friends or family members of children with autism, please share this information with them. I would also be very happy to speak with them.

Wendy

AUTISM RESOURCES

ORGANIZATIONS/WEBSITES

Commonwealth Autism Service 355-0300
http://www.autismva.org

Autism Society of America 301-657-0881
http://www.autism-society.org

Autism Society of America Central Virginia Chapter
http://www.asacv.org

Virginia Autism Resource Center (VARC) 1-877-667-7771
http://www.grafton.org

Autism Speaks International
http://www.autismspeaks.org
http://www.firstsigns.org
http://www.autismspeaks.org/video/glossary.php contains hundreds of video clips
contrasting behaviors that are red flags for ASD; to ensure your computer will support viewing of the video clips, follow the instructions at http://www.autismspeaks.org/video/system_check.php

Autism Today
http://www.autismtoday.com

ABC News
http://abcnews.go.com/health/autism

The Centers for Disease Control & Prevention
http://www.cdc.gov/ncbddd/autism/actearly/default.htm
http://www.cdc.gov/ncbddd/autism/actearly/Spanish/interactive/index.html#top
(information in Spanish)

The Organization for Autism Research
http://www.researchautism.org/

Interactive Autism Network
http://www.ianproject.org

Virginia Foundation for the Exceptional Child and Adolescent 358-8249
family support for autism & other developmental disabilities; training & respite
options

Greater Richmond Autism Support Program (GRASP) 355-6682

Parent to Parent of Virginia 1-888-604-2677

Parent Educational Advocacy Training Center
http://www.peatc.org

Parent/Teacher Resource Center, Chesterfield County Schools
Charlene Lee 743-3703

Parents & Children Coping Together
Joyce Kube 559-6833

Parents Reaching Out
Valley Pickren 291-1663

S.N.A.P. (Support for New Parents of Autistics)
information and support for parents; call 739-8259 or 778-7477 for information

Pathfinders for Autism
parent sponsored, non-profit organization dedicated to improving lives of
individuals with autism and their families
http://www.pathfindersforautism.org

Dietary Information
http://www.asaccc.org/newsthelivingsens.html
http://www.gfcfdiet.com

PRIVATE SCHOOLS

The Faison School
1325 Palmyra Avenue
Richmond, VA 23227
827-3801
http://www.faisonschool.org

Dominion School
4103 Monument Avenue
Richmond, VA 23230
355-1011
dominionschoolforautism@yahoo.com

Spiritos School
400 Coalfield Road
Midlothian, VA 23113
897-7440
http://www.spiritosschool.com

A trip to the shoe store

I wrote this a few weeks ago, but I wanted to share on the blog..

I often wonder what people think when we are out in public and our little man is making odd sounds, walking on his toes, clapping, or flicking his fingers, or the tantrums!  They are probably thinking the same thing I used to think before I knew anything about autism. “What is wrong with that child?  Someone needs to discipline that kid!  Ugh, I wish that kid would stop because that is so annoying?!”  Well, maybe I was more judgmental than you, but that is what I would think.

We went to get him some new shoes today.  The store was in the mall, so like most parents of children with special needs, we figured out the closest door to the one store we will be going to, which also means the closest exit!  I say the “one store” because as most people with autism, crowded areas with with bright lights and lots of noise is over-stimulating to them. Well, we enter the store, everything is okay.  We look at shoes, everything is okay.  The trouble began when he started to try the shoes on.  They weren’t his shoes?!  They were different, they smelled different, they felt different, they were a different color, they were lighter or heavier (not sure which), all of which is change, and to a child with autism this causes major anxiety and fear!  The tantrum began, and I mean freaking out screaming, kicking, rolling on the ground.  Since he does not and will not tolerate being held (typical for autism) I had to keep saying “you are okay” while I gave him pressure by pushing on his legs, shoulders and arms which soothes him.

And then the stares began.  I was angry, I was hurt, my heart broke for my little man.  I wanted to yell “you can stop staring, he’s autistic!” but of course I didn’t.  Instead I tried focus on our goal, comfort him even more and did not get frustrated.  (which did not come from me alone, it came from our good Lord!)  After about 10 minutes or so,  I started to notice the scowls turn to smiles in that store.  I was confused?!  What is wrong with these people?  They were annoyed one minute and now they seem calm and are smiling?  After we chose a pair of shoes and he was calm, a few people came up to me.  “How old is he” one lady asked.  And another, “what a cute boy you have there”.  I suddenly thought, maybe these people learned something or at least noticed a change in his behavior.  Maybe they had a bit of understanding and compassion.  Maybe our son is a true gift from God to help show others that being “different” is okay, especially since Byron and I prayed pretty hard before our adventure!  I left the mall with a smile and a few tears of joy.  I know he is going to make a difference.  I’m sure the “difference” won’t always be a positive one (LOL!) but he is teachable, and is able to teach!  What a blessing we have!

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An example of how he learns..

This looks like typical play, but let me break it down.

1. I follow him to see what he likes to do, which is to hide in cabinets.

2. Use what he likes as a motivator to learn a new skill. When he hides, he learns to open the door when called, after first learning the cause and effect of this particular skill with a reward.

3. I have learned that he responds by me using an enthusiastic sound of voice. This is also an important skill for speech since he will likely be imitating sounds before talking. (Which he is starting to do!!)

4. Once he enjoys this new skill, he can learn further skills and “work” for the learned skill. That way we are more likely to keep the current skill while moving on. He now “works for” cabinet time once he finishes a task that he doesn’t enjoy as much.

See? This is how my child with autism has been learning. This is SO important at this age of diagnosis since he is capable of learning so quickly.  He is so much fun!

 

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Before and after

Our little guy went from an outgoing boy, to a child who could not communicate at all. In the video you will see me trying to interact with him, as well as trying to get his attention by clapping and yelling his name. All of these things he once had were gone. I knew he could hear because after I yelled his name, he became very agitated and tried to cover his ears with the blocks. This was a very mild scene. He was never aggressive towards anyone, but he did a lot of “swiping” things off of the table and floor. He would also scream because he was frustrated by the fact that he could not communicate.

The next video is taken just three weeks after the diagnosis. This is when I researched and used many resources to teach myself how to reach our son. He was sitting, looking at a book, interacting, and pointing at pictures! I couldn’t be more proud of this little gift we were given.

The strategies and tools that I have used are:

1. Applied Behavioral Analysis (ABA) … I personally LOVE this one because I am a research and science nerd!
http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba

2. Picture Exchange Communication System (PECS)
http://www.autism-society.org/living-with-autism/treatment-options/pecs.pdf

3.  VB-MAPP

http://www.marksundberg.com/vb-mapp.htm

I have not received any certification in training at all, but I have amazing friends who are professionals in this field, and have taken the time to train me enough to where I can teach him on my own.  I don’t plan to be his only teacher, but I am here to say that parents CAN work with their children.  The information is out there, you just have to look and ask for help!  My husband and I are still waiting for waivers to be accepted so that we can provide him with in-home ABA therapy- the only scientifically proven treatment for autism.  ABA is also the most expensive treatment, usually costing $60 an hour, and the suggested weekly hours of ABA are 15-30 hours a week.  That adds up quickly!  So until we are able to get insurance on board and the waiver approved, I will continue to work with him, and continue to learn.  I just love our little guy!

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Autism diagnosis- now what?

We were given a huge folder with too much information to take in. In fact, we didn’t go through the folder until that evening.  We wanted to dissect it together to support one another.  We both took turns crying, not intentionally, but I think one of us would cry and then it would set the other off.  There was SO much information; schools for autism, Medicaid waiver paper work, types of therapy, diets, a “how to tell friends, family, and siblings” booklet, how siblings can help booklet, support groups, insurance, websites for information about autism.. anything and everything was in there.  We didn’t even go through all of it that night.
As Byron was still grieving, I was not sleeping and researching everything I could.  Even though I have worked with children of special needs before, I had no experience with toddlers of special needs, not to mention that it is completely different when it’s your child.  I have some good friends that work in the autism field and they were amazingly supportive, giving me resources, book recommendations, and information on therapy so that I could start working with him right away.  To be honest, I think I grieved for one evening, and then I dove into printing pictures for him for Picture Exchange Communication System (PECS), so that I could start communicating with him right away.  Friends of mine in the autism field sent me professional information so I could start therapy with him, and I started that same day.  I haven’t stopped working with him since.  We work everyday all day.  Even our “playtime” is work time (he doesn’t know that though).
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 I guess I look at it as if I have 2 choices.  I am going to either spend a lot of time grieving over the child that I once had, or work extremely hard to get as much of that child back.  I have chosen to work for his best interest.  If he were to make no improvement at all  I would love him just the same, but he is improving.  He is getting better and better everyday.
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It started after his 1st birthday

Twelve years ago, a friend of mine was telling me a story about her daughter’s journey with autism.  She explained that her daughter was just like any typical toddler; running, playing, laughing, and talking alongside her twin sister.  Then one day her daughter stopped talking.  It was such a heartbreaking story, yet she told it in a light manner and seemed to be comfortable and accepting of her daughter’s autism.  I was amazed by her strength and remember thinking how difficult it has to be.  Her journey stuck with me and I have thought about their family ever since.  I never thought that I would be walking that same path with my son, twelve years later.

Our son was born at 36 weeks weighing 8lb 5oz.  Technically he was a preemie, but from the looks of things, he was anything but!  He was put into the regular nursery and didn’t require any special care at all.  He started out the exact same as his two older sisters; healthy, cooing, laughing, happy and lovable.  Our son crawled around 7 months, and was running at 13 months.  Things were very typical and his well visits were great so there was no concern at all for any problems.

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He had 6 words: mama, dada, up, down, yes, okay.  It was a really cute mix of words.  He was interactive.  He loved laughing and playing with his older sisters the most!  When we would call his name, he would answer.  When we would tell him “no”, usually he would stop doing what he wasn’t supposed to be doing..usually.  And then around 15 months, things started to change.

At 15 months he stopped trying to get our attention.  He stopped interacting.  He stopped using eye contact, and he completely stopped talking.  I remember telling my husband that it was probably a phase, or that maybe he was just “being a boy”.  Then the climbing began.  He climbed on the couch, the chairs, and then the tables.  When I would tell him “no” or ask him to get down, it was like it didn’t even register.

One evening he was standing on the kitchen chair and I wasn’t fast enough to grab him.  He fell, hit his head, and off to KidMed we went.  The exam was fine, no concussion or head trauma, but the doctor told us to make sure to get his attention over the next few days to ensure all was okay.  I really though that he was just a toddler boy that wanted to do his own thing and that surely this phase would end soon.  Things weren’t okay.  I had a feeling that it wasn’t caused by the fall, but there was surely something going on.  He didn’t respond to his name at all.  I would yell his name and clap right next to his ear..nothing.  After a visit to his pediatrician the next day, we were referred to a Developmental and Special Needs pediatrician.  I had a gut feeling that this might be autism, but it just couldn’t be.  Not my son?!

He had extensive testing for almost 2 hours. My husband and I watched as our sweet little man wasn’t doing anything the doctor asked.  “Where’s your head?”..nothing.  “Point to the dog”..nothing.  “Where is mommy?  Where is daddy?”..nothing.  These were things that he could do a few months ago, and now it was all gone?!  It was heartbreaking.  Both of us sat “poker faced” with tears rolling down our cheeks.  And then “that word” was said that changed everything.  Autism.

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